Wednesday, April 25, 2012

Elise has been thoroughly blessed in her short life to have been held in the loving arms of so many--cradled, hugged, rocked, squeezed, bounced, embraced. For a little girl who has a difficult time showing love back, she sure has received her fair share!

What must it be like to never sit, crawl, roll, walk, or stand up, always relying on others to hold you? It seems to me that, for a child like Elise, who is born without these abilities, being held is the next best thing! She will never understand how blessed she is to have so many laps to sit in, so many arms to hold her.

In Elise’s life, I have not had the experience of holding her in the way I have held my boys. Their legs tighten around my waist, while their arms hold onto my neck like little monkeys. You never realize how much your little one helps out until you hold a child who cannot. Holding Elise is tough. She can’t contribute anything to keeping herself up. Her arms and legs hang, as if weighted down by sand, just waiting to be placed somewhere by me. Her head nods, too weak to keep an upright position for very long. Even as a baby, Elise was either super stiff or completely loose. Never, though, was she the right mixture of the two to aid the one holding her. As she has grown taller and heavier, I have sadly and reluctantly given up on carrying her around. I now call my husband to get her from her bed to her wheelchair, from the bathtub to her bed, or from her bed to my lap. At least I can still hold her while sitting down. This is something that I have enjoyed doing since she was a newborn, but not without its struggles...

Around 4-years-old, Elise’s love for being held by me changed. She began to act uncomfortable, unable to find a good position. My favorite time to hold her used to be after feeding her a meal. Elise’s new behavior after taking her last bite and being cued to the end of her meal by a wipe of the bib across her face, was to then start squirming, struggling, and fighting against my arms. Once she was full, she wanted to be put down, robbing me of that coveted time of holding her close, patting her back, and just enjoying her. For a long time, I would just give up trying. I couldn’t very well tell her to “cut it out and get still!” So I was forced to take her to her bed or put her on a blanket on the floor. I would accept her request to be let go, and would instead stretch her muscles or brush her hair to satisfy my desire to be “with” her. I slowly began to realize, though, that I was truly missing out on something big with her. By not holding her, I was finding myself disconnected and lacking something in our relationship. I caught on to the fact that if I would just let her fight through it for a few minutes, she would realize that Mama’s not giving up either. She now finds her way through the cycle of wiggling and restless tossing and turning, only to end up submitting to my arms, settling in for a much needed rest in my lap.

Only when she tires out, will she give in. This reminds me of our relationship with God. He will hold us, offering us safety and unconditional love, despite our squirming and fighting against Him. We can always count on Him as our ultimate parent to hold us close, just as our children trust us to do.

Holding and carrying our kids is primal. It not only serves as needed transportation and protection from the world, but it also fulfills something emotionally within us. My mom has admitted to carrying me through the Longview mall until my feet were dragging the ground (shame on you, Mom). In our arms, children find safety. They feel our strength, and enjoy resting on us, recharging their bodies and spirits.

I will definitely miss the memories made by my boys over the years as they continue to grow older. Lane would gently pat my back as he rested his head on my shoulder, always the compassionate one. Ty likes to press his chubby, warm cheek next to mine while being held, allowing me to feel his young skin.

Not experiencing these kinds of moments with Elise most likely drives me to overdo the babying of Lane and Ty. I often motion for them to each come to me, crawl into my arms, and stay.

“Just for a minute,” I will tell them.

At least the sadness of the loss of my ever growing boys is softened by the fact that no matter how old Elise gets, she will never deny my need to hold. I have been given a “forever baby” to fill my arms, my lap, and my heart, fulfilling my desire to hold tight to all that God has given me.

When I picture a mother holding her child, my mind immediately goes to the movie “Passion of the Christ”. It is the ultimate imagery of the love between a mother and her child. Mary’s love was carried on from the stable all the way to her son’s crucifixion. In a particularly poignant scene, as Jesus was carrying His cross through the streets, He falls, while continuously being pelted with rocks and spit upon. When His mother sees this, she is immediately reminded of when He was a little boy, running along a path. He suddenly trips and falls, catching her attention. Mary ran to Him with great concern, picking Him up and cradling Him safely in her arms. Thirty years later, she again runs to Him, desperately wanting to give Him that same comfort. That scene is hard for me to watch. Maybe because of the fact that I myself know that love for a child, but lacking the ability to understand the pain involved in her hurt of not being able to grab Him and Hold him in his time of need.

If compared to the perfect life of Christ, our shortcomings are themselves major disabilities in the eyes of the Lord. We can always, though, rest in the knowledge that He welcomes us to crawl up into His lap for comfort and peace, in the same way that we invite our little ones into our arms, naughty or not. We will never grow too old or too disobedient. He extends an open invitation to us all.

Lane and Ty, born 6 years apart, both had a unique way of asking to be held. Each one of them would approach me, gaze upward, and say, “Hold you.” Apparently, they were taking the phrase away from my question when I would ask them, “Do you want me to hold you?”, or “Let Mama hold you.” Isolating those two words, and using them to request being held was such an endearing thing to hear as a mother. (Ty still says it, and I will not be correcting him any time soon!) What I would give to hear these words from Elise! Instead of being summoned in this way, she has her own style of asking me to pick her up. I know the cry when I hear it. The tone and intensity says:

“Mama, hold you.”

And hold her I will. As long as I can physically do it, I will enjoy cradling, embracing, hugging, squeezing, cuddling, and loving on my forever baby girl.

Welcome to the world! Elise's nurse, who was one of the first people to hold Elise once she was born.

Proud PawPaw holding Elise the night she was born.

G-Maw Goerner and Elise

Aunt Sissy and Uncle Jimmy with baby Elise

Great-Grandpa Watts with Elise and Chris in the hospital

Uncle Monty with Elise

My good friend, Laurie, and husband Billy cradling Elise.

Elise’s wonderful doctor, Dr. Sanchez, at Children’s in Dallas.

(She was loving that glove, huh?)

Elise receiving oxygen treatment with caregiver, Jackie, as an infant.

GiGi holding Elise at her 1-year birthday

Great-Grandma Goerner holding another great-granddaughter!

Great-Grandma Mozelle trying to quiet Elise

Big brother Lane holding his new baby sister

A nurse trying to calm Elise while prepping for an MRI.

Daddy holding Elise during an EEG

Cousins, Madison and Bayleigh, loving on Elise

Great-Grandma Watts swinging Elise to sleep

Mama and Elise relaxing

Aunt Tracy loving on Elise

PawPaw and Elise taking a nap

Poppy holding Miss Elise

Elise and Daddy resting together

(there are no pictures of me and Elise napping together, b/c my husband doesn’t think to get the camera!)

Bubba holding Sissy (they are about the same size!)

D’Layne, Elise’s teacher for several years, carrying her when she was still pretty manageable!

Tuesday, April 3, 2012

I can remember holding my tiny baby girl in my arms, able to do just about anything while keeping her cradled. I enjoyed easily getting her in and out of the car, carrying her into places, and the ability to stand for long periods while holding her. After growing into a tall 7-year-old girl, I now find it very hard to just sit with her in my arms!

Elise didn’t go through the usual developmental stages that most moms and dads revel in. There were no Saturday afternoons spent propping her up against a Boppy to see how long she could hold a sitting position before toppling over. My boys each had distinctive ways that they would crawl across the floor to me as I called to them in a silly voice. Elise was never able to even begin this activity. We didn’t walk in with surprise to see her pulling up in her crib. Her arms, legs, neck, and body just couldn’t work together to achieve sitting, crawling, standing up, cruising, and so on.

During Elise’s first several years, she was easy enough to carry around. We bought a special needs stroller off of Ebay once she became too big for a baby stroller seat. She needed something to sit in like a stroller, but the regular ones that are sold at Babies R Us or Walmart didn’t even begin to offer enough support for her. So, the special stroller was the way to go. Having this as an option as opposed to having to carry her everywhere revolutionized our life. It wasn’t fancy, but it did the job!

Lane taking his sister on a walk in her umbrella stroller. It was Lane’s when he was younger, but never did support her enough. We only used it a few times.

This is The Cruiser from Convaid Inc. It worked very well for a stage in her life. We even used it periodically through the next year or so on and off depending on where we were going. It was just so easy to travel with and maneuver.

When Elise was 2-years-old, we ordered a more supportive “wheelchair-like” chair for her called a Kid Kart. This new purchase ushered us quickly into the “your kid is definitely disabled” category for the world to see. No matter. It is what it is, we couldn’t cover it up or disguise it. We were mainly just thankful for being able to own a chair that could comfortably seat Elise and get her around town with her family.

Kid Kart

The Kid Kart was great while it lasted -- which wasn’t long! By the time Elise was nearing 4, the headrest had completely snapped off due to the way Elise throws her head back and slams it into anything that she is resting on (such as the floor, a mat, my chest, and any headrest). This is normal behavior for Elise, and cannot be stopped, but only pacified at times. She was also growing like a weed, so a new chair was ordered.

In 2008, Elise received what we call the “Rolls Royce” of wheelchairs. It is called a Kids Rock. It has a shock system that allows her legs and torso to move as she moves. She isn’t stuck in one position, fighting against her straps. For a kid like Elise, who has spasticity, and major extensor patterning issues (she extends her back, neck, arms and legs in a way that could literally fracture a bone if kept too tightly in place). This chair has been our favorite, and has lasted the longest.

This is the Kids Rock. This is what we still have and will miss. It has worked pretty well for Elise. I have loved the shade, "tilt in space" mechanism, and adjustable handlebars.

Elise is, though, outgrowing this chair, and I am worried in anticipation of the switch that is to come with a brand new one. I know I will be sad to see her current chair go, almost as if a part of her will go with it. Yes, it is just metal, rubber, springs and screws, but it’s actually much more than that to me. Elise’s wheelchair becomes an extension of her. It almost shares her personhood. It is a must-have for us to take her to even the shortest of distances. That is why it is always a nerve-wracking process for me when it is time to move on to something new. Her chair has a personality of its own. I know it’s quirks; its ins and outs. It takes a while to get to know a new chair, and how to work all of the intricate details of each part and function. It will use her new headrest (which I’m not used to yet), a new hip stabilizing feature, and different supports. I do rest in the knowledge that her next one will be fabulous, and I will learn to love it.

Any time I get irritated at the fact that I have to wrangle a wheelchair in and out of the back of my van, squeeze it through door openings not meant for big, bulky chairs, and maneuver it through too-narrow aisles at the store, I have to stop myself and remember to have only thoughts of gratitude. I am grateful for the fact that my daughter even has the pleasure of sitting in something that totally supports her, gets her out and about in the world, and offers her everything her little body needs -- the comfort of padded seats, supportive belts, and a place to put stickers collected at the doctor’s office. Without this chair, Elise would not be the only one to suffer. Her whole family would be affected by being stuck at home without the ability to physically carry her around.

When I think about how much her wheelchairs have meant to her happiness as well as ours, I stop to thank God for where we live, our resources, and our accessibility to this life changing equipment.

Now, if only I had a wheelchair accesible van to put her wonderful wheelchair in…

One day, Ashley. One day!

Family picture in Kilgore, Tx at my 10 year high school reunion. She was chubby and bald for a lonnnng time. The Cruiser was perfect at that time. Lots of room to grow.

Elise in the Chicago airport on our way to ABR physical therapy. This was our easiest wheelchair for air travel.

The Cruiser was easy to decorate for Halloween!

Elise with her GiGi along at a doctor’s appointment. Her chunky little legs didn’t reach the foot plates, but that was ok for her development at the time. Now, footplates are a MUST!

When Elise had leg surgery, and was in full leg casts for 7 weeks, we sometimes used this stroller even though we had moved on to a different one at the time. It was easy to prop her legs up on a platform that Chris wedged into the chair’s seat. We had to be creative!!!

Just a close up of the chair and it’s straps for anyone who may be interested (special needs parents). It also collapsed VERY easily and fit anywhere an umbrella stroller would fit.

Kind of a funny picture of Miss Elise... She was still in her chubby with no hair stage... Anyway, this is the Kid Kart. It was much harder to get in and out of the car and travel with. I had to take it apart into 2 pieces. I didn’t have a van at the time, so I spent many frustrating outings trying to stuff it into my car’s trunk!

With all of her wheelchairs, I have attached her favorite texture toys to the vest or other straps. She definitely knows that they are there, and will pick them up to play with them. When she drops them, they don’t fall away, and she always knows where they are. (I really DIDN'T like the shade on this chair. It covered NOTHING!)

With the Kid Kart, I could take the seat off of the wheelchair base and put it on another lightweight base to be taken around more easily. We used this feature to save room while in the house.

You can see how she really grew into this chair. We also liked to used the tray for using switches.

Of course, my able-bodied child had to take his turn in Sissy’s cool chair. This is when Lane was about 4. He is 9 now, and I have to tell him to get out of her chair at least once a week!

This is her in the Kids Rock chair. We propped up Elise’s casted legs in her chair right after getting it. Looks pretty comfortable to me!

Accompanying Paw-Paw and Lane to school for Lane to go to Kindergarten.

This is Elise and Jackie working with a switch hooked up to her fan. We now do most switch work in Elise’s Rifton Chair. We find it much easier for her to work in.

Wheelchair Fashion Show!!!

I use the wheelchair to my advantage in order to get pics of her pretty outfits. Most pictures I get aren’t perfect, but it takes many tries to get one with her hands off of her face, her eyes open (unless she’s asleep), and with her not hitting herself!

We just got a new I2I headrest for her chair. We were having a very difficult time keeping her head on her headrest. She loved to bend it to the side and off of the headrest, getting her head stuck behind it. It was a major issue and very irritating to keep fixing her, so this one keeps her head in place. It kind of messes up my pics of her outfits, though.

Without her wonderful wheelchair, she couldn’t have joined her brothers and me on our 2 mile walk to Sonic for lunch during Spring Break. I love doing things with all 3 of my kids together when possible.

I love the stage that Ty is in right now. He is just tall enough to reach over and give his sister a kiss at his height. He is also the one who loves to take rides on her lap. Sadly, he will soon be too big to do this, but I hope he will always have memories of sharing the chair with Elise!

UPDATE: This is Elise's "new" wheelchair. We have had it for over a year now, and are finally adjusted to it! Changing wheelchairs is always difficult for me. It's like losing a part of your body and starting over with something new and unknown.

In this chair, even more than in the last, she keeps her head and chin down more (due to her changing tone and personal behavior).

We usually recline her to a point where she is more comfortable keeping her head back. Her PT mentioned that it is usually better to keep her more upright whenever possible, so we sometimes use this chin rest pictured below for her, which works very well.

Elise's wheelchair means a lot to her as well as to me. I consider it her legs, and unconsciously become attached to it. This is probably why I actually took pictures and shed a tear or two when we changed out this last time!